Penis, Vagina, and Breasts

I am not a therapist. I'm certainly no sex therapist. But I will talk about it and the things I've learned and researched as it pertains to me and others with MS. Which is why I was asked last year to facilitate the Healthy Relationships and Sex chapter of a Journey to Wellness program for fellow MSers. Part of what I presented to this group, and will present to a new group this year, follows.

One of the first sensations we have as babies, is the sensation of touch. In fact, the earliest sense to develop in the fetus is the sense of touch. Human babies, and other primates have been observed to have enormous difficulty surviving if they do not have this sense. As well, if babies are not touched and held, they have developmental difficulties.Touch is the most basic part of a sexual relationship. We don't usually just jump into sex without some other physical contact. Touching, exploring, caressing; these are all part of an introduction to sex.

But what if touch hurts you? Most of us with MS have experienced this. It's the reason I began to use a cane in the early days of my diagnosis, to keep people from touching, either deliberately or accidentally, the sensitive side of my body. Luckily the pain went away in a few weeks, but during that time an invisible line went through my body dividing it in half. The right side was on fire, itchy, and painful to touch. The left side was fine. The line that went through my body also divided my genitals. No amount of KY jelly in the world was going to enable me to have sex without serious pain. If the pain we experience from those sensory symptoms is longer than a few weeks, there are medications that can help reduce the pain. This is where having a frank and open dialogue with your doc is of benefit.

Another problem a lot of MSers face is spasticity. This one may take a little longer to figure out. Some positions may be difficult to hold for any length of time or may result in painful spasms. My first suggestion is to experiment. Which positions work best for you? Would extra pillows or styrofoam forms help you maintain a more comfortable position? Or perhaps ties or ropes to help keep you in a comfortable position. Maybe sitting on the kitchen table is the best position. Find what works for you and do it. And again, there are meds that can help ease spasticity.

What about the question of libido? Drugs, pain, and mental status all contribute to a lack of libido. Experimentation is the key word to libido. What made you think about having sex in the past? Try it again. Fantasize. What would you like to do but haven't done? Talk about it. Remember, what's between your ears is the most important sex organ you have. Have a "touching" party, where you do NOT have sex, but only touch and kiss. Make out like teenagers. That might take some of the pressure off having to "complete" an activity, and arouse feelings you thought were gone.

There are a whole slew of reasons people don't have sex when they have MS, both biological and mental. Bowel and bladder problems can be a definite hindrance. Buy rubber sheets or put down a painting tarp (or old shower curtain) for accidents. If you are able, empty your bladder before sex. Toys can be a great benefit for folks whose sensory abilities are reduced and need a little more physical stimulation. (For folks still shy about visiting adult stores there are a whole slew of them on line. And I read of a "Christian" online adult store, run by a husband and wife team) And TALK to your partner about your concerns. If you can't talk to your partner about what you want and need to have sex, that's a whole other can of worms you have to learn to deal with first.

Talking and experimenting are the two main things I suggest to people who are having difficulties with sex because of MS. We talk easily enough about the chili that gave us gas last night or the broken arm we had as a kid, but we have a harder time talking about sex. If you can say the word "finger" out loud, then you can say penis, vagina, or breast, too. Try saying out loud the words you find embarrassing. Repeat them until they roll off your tongue like other words. Communication is key to all of us. If saying certain things, or asking your partner for particular moves is difficult, consider writing or typing out what you want or don't want. Write it in the sand at the beach. Send a telegram. Act it out. Take out a personal ad in the paper, then when it's published, circle it and leave it for him/her to find it. As long as you get the message across, who cares how it's done.

And sometimes, even if you don't feel particularly sexy, engaging in sex can ignite the flame. It can also help you sleep better. And there are the added benefits of the hormones and chemicals it releases into your bloodstream that make you feel good, sometimes with pain-relieving effects.

Just like the lottery, where you can't win if you don't play, we can't get from sex what we want without some guidance for our partners. They're not mindreaders, after all.

S.
This is not a speech I give for the presentation. But it is an outline of the direction I go, with lots of room for discussion by and with the participants.
By the way, I'm interested in what suggestions you might have as far as this topic goes. What questions might you ask?